Not surprisingly, I totally spaced it and forgot to pull back the curtain on Eddie's "old friend" mentioned in an earlier post. Before that, however, it might be helpful to outline what happens when we take Eddie to clinic each week. Even though we're officially discharged, we continue to spend a significant amount of time walking the halls of Seattle Children's.
In general, there are three elements to Eddie's follow-up visits . . . ECHO, clinic, and lab. The ECHO is exactly what it sounds like . . . an echocardiogram to get the best possible set of eyes on Eddie's new heart and assess its function. Now that Eddie has undergone dozens of these over the past few months, he is super relaxed and the 30 minutes fly by quickly. So far so good with Eddie showing improvement every week. Most notably, his TR (tricuspid regurgitation) has diminished significantly since transplant. This is great news since we originally thought there was some damage to the donor valve that would never totally resolve itself and would need to be watched closely for the duration. The improvement, however, appears to signal that this was a temporary issue.
After ECHOs, we usually meet with our transplant cardiologists and coordinators to do a hands-on examination and discuss any specific treatment issues. We talk about meds and often make adjustments to dosing based on how well or poorly Eddie is responding to current treatment. Since we are also taking twice daily vitals at home (blood pressure, heart rate, breathing rate, and temperature), we'll spend some time reviewing any notable trends or patterns and discussing potential next steps.
Finally, and our least favorite part of the process, we head up to the 6th floor for labs. Now that all of Eddie's lines have been removed, we have to draw blood in order get his cyclosporine and electrolyte levels along with his low molecular weight heparin level. The former are critical for determining whether Eddie's immune system is suppressed appropriately to avoid rejection while the latter is measuring the thinness of his blood and is important since Eddie has had several dangerous clotting events over the past few months. These labs must be drawn at very specific times of day (7:30am for cyclo/electrolyte and 11:00 for heparin) and, as you can imagine, involve a lot of tears.
Eddie has put on significant weight since leaving the hospital two weeks ago. As of yesterday, he tipped the scales at 16.1 kg compared to the 13.3 kg he weighed during his transplant evaluations. At his lowest point, he was down to 12.6 kg including his berlin heart pump. It's hard to believe he's gone from being a flyweight to a bruiser in just a few short weeks . . . thanks to a combination of steroids, consistent and predictable nighttime NG feeds and, last but not least, improved appetite. As we back off the prednisone over the next few weeks, he'll probably lose some of his existing bulk.
Finally, during our 6/1 clinic visit, we asked if we'd be able to visit with pathology and see Eddie's old heart. While it seems like a macabre request, we thought it was really important to understand Eddie's disease and put into perspective the miraculous gift we had received from a loving donor. When we walked into the room, a tray was laid out on the table covered with surgical cloth. The pathology fellow introduced himself and then pulled back the cloth . . . and there it was. After we sat gaping for a few minutes listening to his findings, he offered us surgical gloves and asked if we'd like to handle the heart. What an unimaginable privilege . . . to actually hold in our hands the small, diseased heart that both kept Eddie alive and almost brought his short life to an end. After the intensity of the past few months, we almost felt like talking to it, perhaps scolding it, and then certainly forgiving it for its weakness . . . this poor diseased organ that had no business surviving for as long as it did.
So five weeks after transplant and three weeks after coming home, we're on a fairly steady upward trajectory. We're worn down a bit by the med schedule and hospital visits, but looking forward to some family time over the summer . . . once the rain finally stops and the sun makes a cameo appearance.